Sara's every progress and smile fill us with joy
“It is extremely important for every child to receive the therapy they need.”
Sara. A girl who, with her personality and cheerfulness, brings light, warmth and joy to her family and to all who get to know her, just as the meaning of her name implies.
Sara (5), according to her mum Josipa, is a girl whose smile leaves no one indifferent. She likes to play, easily accepts new people, and wins the heart of everyone who happens to be near her. So, it is not surprising that Sara is the family favourite, although she is growing up in a large family with four siblings with whom she enjoys playing.
“As a family, we are adapting to Sara as much as we possibly can, and, with five children, it is never dull in our household, as the days are always filled with activities. Sara usually wakes up around seven, the same as her brother who is in the second form, and she plays while I take care of the youngest, Iva, who will soon be one. Still, as Iva is growing, everything is becoming easier, so I have time to cuddle Sara before her transport arrives for Mali Dom, where she goes for therapy. My husband now works only in the morning shift, and that makes things easier. The children go to school in different shifts and come back at different times. While Sara is at Mali Dom, I do the housework. Soon after Sara comes home, my husband also arrives, and we have lunch together. Then homework assignments and sporting and other activities are done. After her sister reads her a story, Sara goes to sleep at eight. At weekends, we each pursue our own interests and activities, or we all go for a walk in the countryside”. This is how Sara’s mum briefly describes their family life.
The family found out in pregnancy that Sara would be born with microcephaly. The consequence of microcephaly means that Sara’s growth and development are stunted, and thus at five and a half, she only weighs 11 kilos and wears clothes for a three-year-old.
“Sara can’t walk, doesn’t talk and doesn’t understand. She gets around by crawling on her belly; she can’t crawl on all fours or stand up, but thanks to therapy, she can sit up by herself on the floor. She can sit propped up in a pushchair and in a chair. She looks forward to playing outside, and especially likes swings, as well as riding in the car, listening to children’s songs and music. She really enjoys watching football games with her dad”, Sara’s mum Josipa told us.
Josipa reluctantly recalls the very beginnings, after birth. Although they had no problem obtaining special check-up appointments, and all the doctors were extremely patient and kind, there was a lot of wandering around. Some information, for example, on the importance of early childhood intervention, did not reach them as parents early on. They would have missed many chances, says Josipa, if it had not been for the internet. Luckily, Sara started therapy as early as at eight months in Mali Dom, and they are very happy with the support they are receiving there.
“You search around, you ask, you look for people with similar experiences, you try things out… A special moment for me and my husband was when Sara looked us in the eyes for the first time. This was when she was one year old, and we are aware that this was possible only thanks to the therapy she had received. Every, even the smallest, progress that Sara makes fills us with great joy. As soon as she succeeds in something she couldn’t do before, we immediately take photographs and send them to her physiotherapist, then to Mali Dom, and to her grannies and aunties. They all rejoice with us and they are great support to us”, says Josipa.
“It is very important for every child to receive the therapy they need, irrespective of whether they grow up in Zagreb, in a small village, or on a remote island, or whether the family has the financial means to provide the necessary therapy, or whether the parents know how to get hold of information”, says Josipa.
It was precisely the strong support that surrounded Sara and the whole family that helped Sara to progress. Josipa would like all parents of children with disabilities to know that they are not alone. “You are not alone. Ask around, it is always easier when you have someone to share what is weighing on your heart. Be brave. You are only given as much as you can handle. Seek help when you find things hard to bear. Don’t shut yourself off and stay silent. Accept any help and never give up on your child.”